ANNUAL REPORT 2014

Edinburgh Carers Council is an independent organisation that provides individual and collective advocacy services to mental health carers. We believe that carers should not be disadvantaged because of their caring role, and need to be respected, valued and taken seriously. Our independent, confidential and free advocacy services help carers access the support and information they need to be in control of their own caring situation.

Edinburgh Carers Council is a registered charity in SCO28469 and is funded by NHS Lothian and City of Edinburgh Council.

© Edinburgh Carers Council 2014 CHAIRPERSON’S REPORT

The services that Edinburgh Carers Council SUMMARY provides continue be in demand. Information,  118 people received individual advocacy individual and collective advocacy and the  Our M anagement C ommittee members hip doubled representation for carers at many levels are  We hosted a City Chambers Social Event for Carers core and valued activities.  Butterfly Bursary funding for Eating Disorder booklet  Our Carers Forum celebrated its first anniversary In March the management committee began work  A new post of Information & Resource Worker on an impact report for the organisation. We looked at how changes in the past three years had impacted on our work and responsibilities as Trustees, on staff and on the services we provide for carers. This process, which took three months of consultation with staff on workload, direction and purpose, has enabled us to refine our advocacy work and be clearer about priorities.

The management committee has taken the opportunity to reflect on the past three years where it has guided the organisation through new relationships and arrangements with AdvoCard and other Lothian carer organisation’s. This reflection has offered opportunities to strengthen our relationships with key partners and establish clear and transparent working relationships.

Particular highlights in 2014 have been the award of a third year of funding for the Transitions Carer Advocacy service and the appointment of a new post, Information and Resource worker, a long awaited and welcome post. We also heard in August that the three year advocacy contract with City of Edinburgh Council will be extended for two years from 1st December 2014. This demonstrates that Edinburgh Carers Council has achieved its aim of delivering an increased service for carers as well as forging positive working relationships with partner organisations while maintaining its quality standards.

Changes in services, for example the re-provisioning of the Royal Edinburgh and introduction of Self Directed Support (with direct payments as one option) often present challenges and uncertainty for carers. ECC plays a crucial role in representing and involving carers strategically to ensure their views and experience count. We have also done this through involvement in the Lothian Joint Mental Health Strategy A Sense of Belonging, The Wayfinder Partnership and the National Forensic Mental Health Carer Network, to name a few.

Locally staff and carers are involved in the Orchard Clinic Carer planning group, the acute care review at REH, the Edinburgh Crisis Centre Partnership group and the Edinburgh Carer Network. We have developed the quarterly Carers Forum which celebrated its first anniversary. Our annual music fundraising event and Carers event at the City Chambers are ways of fundraising and connecting with our members and new carers to the service. ECC continues to grow and the service it provides is needed more than ever in these changing times.

Our training role continues to grow with our “Working Well With Carers,” and Edinburgh Napier, and skills based carer training was also piloted. This has highlighted the need to consider the value of a dedicated training post.

With the continuation of both the NHS and the City of Edinburgh funding brings a new year of changes, opportunities and growth, however there is never change without loss. While we welcomed the knowledge and skills of new committee members, Maxwell, Rod, Leah and Gaby, we also say goodbye to Linda who has worked with ECC over many years. Her contribution to the networks, fora, strategic groups, training courses and group developments are countless and we all wish her well in developing her career in counselling.

Gwenne MacIntosh Chair

INDIVIDUAL & COLLECTIVE ADVOCACY

At Edinburgh Carers Council we believe that advocacy has a vital role in making sure that the carers voice is heard and they can make informed choices and decisions. We are the only independent carer advocacy organisation in Scotland and therefore in a unique position to see the effects of independent advocacy from the carers perspective.

During the past year 118 carers used our individual advocacy service. Common issues are;  Communication and information sharing by services  Hospital admissions, discharge and detention under the Mental Health Act  The need for advocacy support for the carers who are Named Persons at Mental Health Tribunals or when involved in Guardianship proceedings.

Edinburgh Carers Council has developed a Carers Mental Health forum which meets quarterly and is open to all carers supporting someone with mental health difficulties from across Lothian. The forum is owned by carers and facilitated by staff and is a friendly, confidential space for carers to express their views and raise issues.

Since last June we’ve had guest speakers on short breaks and respite opportunities, a talk on the re-provisioning of the . Michele Harrison, Lead Research Practitioner, Queen University, came long to discuss the Wayfinder Partnership and Paul Noyes from the Mental Welfare Commission gave a presentation around carers and confidentiality. In June this year one of our carers gave a presentation/ master class on the issue of making a formal complaint.

Collective advocacy for carers of people in older people’s mental health services, including those carers of people with dementia, has grown this year. The Jardine group at REH has been meeting for two years and a new collective advocacy group has been developed by ECC for carers of people in and Findlay House, which are older peoples continuing care wards based in the community. These groups concentrate on issues around safety, privacy and dignity in the wards and have represented the views of carers this year with Clinical service managers and the Mental Welfare Commission. This has led to improvements in the ward environment, better involvement and information for relatives and new programmes on the wards through using volunteers

Child and Adolescent Mental Health Services (CAMHS) Earlier this year a number of carers, both through individual and collective advocacy, raised a number of concerns and issues about their experiences of CAMHS in Edinburgh. It was agreed to raise these concerns directly with the CAMHS service. Following a meeting with their service manager Edinburgh Carers Council delivered a workshop to approximately 15 members of staff from both the community/day and inpatient services. The workshop focused on the issues and difficulties that carers experience, what makes for a good carer experience, transition and making it better. The workshop was well received and it is our intention to build from this and develop stronger links with the services as a means of promoting best practice.

Transitions Advocacy Service

The Transitions Carer Advocacy Service is now entering its third year. The service has developed from its original remit and now focuses on providing advocacy support to all carers of people with mental health difficulties who are experiencing a period of transition whether that is from a secure to low secure setting, from hospital to community setting or, at the initial stages of contact with mental health services. Over the next year the Transitions Service will be developed further by strengthening links with the Orchard Clinic and hospital and community based rehabilitation services and establishing new links across mental health services.

Butterfly Bursary

In June 2013 we were awarded a bursary of £3250 which has been put towards our Eating Disorders Carers group to develop a booklet for carers. The Group have drafted what they feel is important for carers to read when they first come into contact with mental health services. A flyer is also being designed for display in GP Practices throughout Lothian, which will help inform carers that they are not alone and how to make contact with us for more information or advocacy. More importantly it will also put carers in contact with other carers to share experiences and feel supported.

Self-Harm Information Sessions

In September we facilitated information sessions on Self-harm which were run by Merrick Pope, Clinical Nurse Specialist at the Self-Harm Service based in the Royal Edinburgh Hospital. The carers who attended found these two sessions very informative as it covered how to better understand self-harming behaviour, look at the reasons behind it and strategies to support someone who exhibits such behaviour.

Strategic Groups

Edinburgh Carers Council continues to represent the views and interests of mental health carers on strategic groups such as the Lothian Programme Board, the Edinburgh Joint Mental Health Planning Forum and the Lothian Strategic group on Eating Disorders. We are members of the Edinburgh Crisis Centre Partnership Group and the Wayfinder Project which is taking forward changes in the provision of mental health rehabilitation services.

Collective Advocacy Groups

Collective advocacy for carers of those in Older Peoples services has reached new levels of activity and engagement in the last year. The Jardine group, which has been meeting 4 to 6 weekly for two years covers relatives and carers of patients in all of the six older people’s wards in REH. Some wards are for people with dementia, others are for assessment and rehabilitation. It is facilitated by ECC and can raise collective issues with managers, strategic groups and/or our mental health forum.

The following are just some of the activities undertaken by the Jardine Carers group in the past year;

 Developed summary of issues about safety, privacy and dignity on the wards which were fed back to Charge nurses and Clinical Service Manager for the service  Liaised with the Volunteer Bureau in REH and with Occupation Therapy staff to improve activities on the wards  Organised a successful stall at the REH Summer fete to raise money for the above  Met with the Mental Welfare Commission to discuss failings in care on the assessment wards  Monitored the NHS Lothian Action plan for improvement (includes staffing levels, ward environment and medication policy)  Nominated a staff member from Jordan ward for an NHS achievement award We always try to link up the experience of carers which they bring to the individual advocacy service with the collective groups, including the forum. This has led to improvements in the physical ward environment and improved information, communication and advocacy for carers within older people’s services.

In September, a new collective advocacy group has been developed by ECC for relatives of people in Ferryfield House and Findlay House, which are Older Peoples continuing care wards based in the community.

RAISING OUR PROFILE

Music Fundraising Event & Carers Social Event

Following the success of our first music fundraising event last June we have decided to do it all over again. In fact, following discussion with the Electric Circus, Edinburgh Carers Council have decided to make this an annual event. The purpose of the event is both to raise awareness and funds for mental health carers. The funds raised from last year’s event allowed us to host a social event for carers at the City Chambers in June.

The event was kindly hosted by Councillor Norman Work, Carers Champion, and guests enjoyed an evening of beautiful music by talented Scottish harpist, Esther Swift, as well as food, wine and great company. A big thank you to the generous donations from Sainsbury’s Longstone and EdTheatres who donated raffle prizes. The second music fundraising event will be at the Electric Circus, Market Street, Edinburgh on Thursday 23rd October from 7 to 10 pm. We have been delighted at the generosity and support from Withered Hand (solo), Sarah Hayes (Admiral Fallow) and Blue Rose Code (solo). We received some very generous donations from musicians and businesses, some of which will be raffled on the night and others added to our online auction. We look forward to a great night that raises awareness and funds for mental health carers.

Website & Information Resources

Work has been done on our website to improve the page layout, appearance and ensuring links are working and information is up-to-date. We also now have a F acebook page (www.facebook.com/edinburghcarerscouncil) where followers can stay updated about our latest news and events.

Two of our booklets have been revised and re-printed, these are the About Us and Individual Advocacy Service (formerly called Carers Advocacy). The Orchard Clinic booklet is in the process of being updated. All these booklets will be available on the website for downloading or can be sent to carers. We’ve also been busy communicating with carers via our quarterly newsletters, ensuring members and carers are kept informed about industry news, training and events.

Carers Week 2014

We were delighted to be part of the working group on Carers Week 2014. A drop-in event was organised by Edinburgh City Council, and along with other organisations we had an information stall where carers could gather information or have a chat about our services. We look forward to taking part again in the future.

Jardine Carers Group A big congratulations to the Jardine Carers Group who had a stall at the Royal Edinburgh Hospital Summer Fete. Their hard work is appreciated, and the funds they raised (over £400) will go to benefit dementia patients on the Jordan Ward at the Royal Edinburgh Hospital. Thanks to everyone who donated bric-a-brac for the fundraiser.

FEEDBACK FROM CARERS WE HAVE HELPED…

“Excellent. A lifesaver. The only support available at a crucial time. Without it things might have been very different.”

“I attend a group with other carers of people with Borderline Personality Disorder, which I have found very useful both as a source of information about the condition and possible treatments and also as a means of letting off steam. It is comforting to know that we are not alone with our problems.”

“Your services were extremely helpful, especially during a very difficult time.”

FINANCIAL STATEMENT The Receipts and Payments accounts for the financial year 2013/14 have been approved by Edinburgh Carers Council Management Committee. Net receipts (i.e a Surplus) for the year were £23,796 and the closing bank balance of £76,857, representing;

Unrestricted funds £30,473 Restricted funds £46,384 Copies of the Accounts and the Trustees Report will be presented at the AGM and can be obtained from our office at The Canon Mill, 1-3 Canon Street, Edinburgh EH3 5HE.

The auditors are Alexander Sloan CA

MANAGEMENT COMMITTEE STAFF

Jane Green Ruth Rooney Co-ordinator Rod Hart James Arthur Development Worker Leah MacGilp Linda Macleod Development Worker Gwenne MacIntosh Andrea Ridley Development Worker Gabrielle Nolan Kellie Thomson Information & Resource Worker Maxwell Reay Stacey Webster

The Canon Mill, 1-3 Canon Street, EH3 5HE T: 0131 270 6087 E: [email protected] www.edinburghcarerscouncil.co.uk www.facebook.com/edinburghcarerscouncil